Posted By Posting
Jan 15, 2009
molly's mom
PLEASE help!!!!
Hi, My daughter is almost 6 months old. We have been struggling with feeding her for almost 5 months. In the beginning she never really nursed very long about 10-15 minutes total. She stopped gaining weight and at 2 months they admitted her to do tests. They came back with nothing, but told us she had acid reflux and failure to thrive. At that time I had to stop nursing and pump only. I did that for about 4 months. She is now on nutramigen. She also takes prevacid three times per day (7.5 mg each time). We have done many tests on her and everythig is fine-brain activity scan, swallow test, x-rays on body, expanded newborn screening, metabolic testing. The only thing left is a scope. I am hesitant because I don't like the thought of her being put under. She has never been a big spitter (maybe about 3 weeks where it was bad), she isn't super fussy, she just refuses to eat. Her total intake is usually abut 17-20 ounces per day (which is half what she needs). She has been off and on an ng feeding tube, she just recently started rice cereal. I noticed dry patches and patches where it looks like there is no color or pigment (on her arms and stomach). We have since stopped and it is not getting better. The other concern is with her bowel movements. THey are green all the time (used to be yellowish orange) and sometimes they seem to have mucous in them. After all of this the GI says he is not concerned. Do you have any ideas on what it could be? How long is a typical feeding aversion last? Is there anything that can help?
Jan 15, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
17-20 oz isn't half of what she needs...unless her metabolism is abnormally high. I'm lucky if I can get more than 24 oz into Zack and he's 15 mo old! He's never lost weight, but he isn't gaining. He has a pertty severe oral aversion and is a big puker. He's had lots of tests and they can't find anything specific. Were waiting for allergy tests now. Mucousy poop is often a sign of an allergy. Green bowel movements is probably from all of the iron in the formula. Breast milk poop is usually orangey yellow and formula is generally green. I would possibly talk about allergy screening. Nutramagen is hypoallergenic, but NOT as hypo as Elecare for instance. Nutra. still has some lactose protein in it (if I'm not mistaken). Elecare is corn based and is easier for kids with allergies etc to digest. I'm so sorry you're dealing with this, but you're in the right place. Best of luck and keep us posted!
Jan 15, 2009
molly's mom
Thank you for your advice. I thought that 20 ounces seemed like a ton too, but the dietition is trying to get her to catch up a bit (?) Can you do allergy testing on a little one (6 months old)? Thank you for the poop explanation...I just wasn't sure what it could mean. Is is hard for you to feed your son...what does his aversion look like? I mean does he cry and arch or does he just not eat? Molly does both.
Jan 15, 2009
engin117
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My daughter is 18 pounds at 20 months. She was down to about 8-15 ounces a day from 6 months to 1 year. She did not grow at the rate the docs. wished her to, but she did grow on her own growth curve.

Have you tried any other PPI's? Sometimes it takes a few tries to get one that each individual child thrives on. Also, we found the NG caused a great deal of oral aversion.

Meggy never tolerated Rice cereal. I think it is tough on their little bellies.

I feel like I am rambling and I have been up 36 hours and just been poked 42 times, so I will get some rest and comment more.

Just wanted to say that I have found a tremendous amount of support here. It feels like all of these ladies are my family and my friends. What you are dealing with is not easy and it certainly strengthens us going through all of it. I hope that you can find something that helps and soon.

If you are terribly uncomfortable with how much she is eating and the doc. is okay with it, it might be time for a second opinion.

The aversion can last as long as the NG tube is a factor and as long as the pain is a factor.

Jan 15, 2009
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
Adriane did both crying and arching and just downright won't open her mouth before we started on the neocate. Even a few days after that she wouldn't eat anything and we had to do the ng tube for a while. she just couldn't figure out that it wasn't going to hurt her. Even though in actualality it probably was because we had to change formula again. How much does she weigh? Our doc told us that she had to be taking in 20 oz. at 8 weeks old and i thought that was just too much for a lo. My oldest was a good eater and she never took in that much. I held off because our only other option was TPN (iv feedings). I say listen to your gut. If you think she should be taking in that much then push the issue but if you think she is okay with what she is doing then don't. KWIM.

Have they suggested feeding therapy? I think that she could benefit from it. I agree with the green vs. yellowish poo. It is probably from the switch from the bf to formula. I don't know what age they will test for allergies. They tested A at that age, RAST only, and everything was negative. She has several severe food allergies so it wasn't accurate for us. At this age it is sometimes just an elmination process. if it helps consider it an allergy or intolerance until you can get an accurate allergy test. Someone else might have a different experience though. Good Luck and mother's intuition is a great thing. It usually doesn't stear you wrong. -Amanda

Jan 15, 2009
katiesmommy
Tracey, mom to Katie diagnosed with GERD at 3 week.
Our GI said nutramigen tastes nasty so they don't like it. At 11 mos. Katie was only bottle fed and took in no more than 23 oz in a 24 hour period so I think 40 sounds really high. The change in poop color is related to stopping breastfeeding and adding food; it is harder to digest and has iron. The mucus sounds like an allergy like Zack's mom said. Food aversion can show as arching and crying; Katie will still do both at 15 mos.
Jan 15, 2009
abbysmom
Andrea: Mom to 3 crazy girls!
Jackie (3/01)
Payton (9/03)
Abby (4/06) Prevacid 7.5mg (evening), MSPI, goats milk (currently trying to wean off Prevacid)
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You have already gotten great advice but from everything you are saying I would def ask to try Neocate or Elecare. Def sounds like it could MSPI or a milk allergy.
Jan 15, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
Zack arched and cried and was generally miserable when he saw the bottle coming toward him (and yes, he would clamp those lips shut and NOT eat...it was an hourly fight and I shed a LOT of tears over it)...it got so bad that you could walk into the room with a bottle and he would throw up (we did a LOT of sleep feeds)...he is MUCH better about taking a bottle now...rarely refuses, but he throws up a lot...(which is better? lol...I think I can safely say that he is not in pain NOW). I think I can say that 26 ounces would be a great number for a 6 mo old...but every kid is different. Z had a LOT of 15-18 oz days and never lost...just wasnt gaining. He's finally at a point where I can get in 26 oz and a couple bites of banana. It's sad, but that feels like success!! We also skipped rice cereal...I tried it and it made puking worse. Allergy testing isn't too reliable at this age, but elimiation is the way to go...I would talk to your GI about the mucous and possibly trialing Elecare....lay off the cereal for a bit...and when you try purees, give them a good two weeks to see if you get a reaction of any kind. Most of all, try to keep things positive...if she is refusing...try not to push it (I did it and regret it so much)...try again in a half hour...you'll feel like you are feeding 24 hrs a day, but you'll save yourself the pain of real aversion later...I hope! SOrry this is so long...we've been there and we're here to help!!! I would have been even more of a mess without this site!
Jan 16, 2009
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
I just saw this in Parenting magazine: someone wrote in saying that her baby started arching her back in pain and the doctor put it down as reflux. But, it turned out that she was allergic to foods coming through her breast milk. She then states "I've since learned that many infant allergies are missed due to the reflux diagnosis." This was our case too. Do allergies/asthma of any kind run on either side of your families? There are different types of allergies & different tests to detect them. The scratch tests are most accuarate, but only for IgE (immediate onset) type allergies. If you think milk is a problem (hence the Nutramagen?), soy will also be a problem 40% of the time. Can you try her on something like Neocate (warning: expensive (but sometimes very necessary) for a few weeks & see if there is any improvement? It may take her that long to get use to the taste. I would do 1/2 and 1/2 in the very beginning. I hope you can figure out what is ailing her. Ellen
Check with your
doctor first!